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Reflection

My emotions were very mixed while reading, “Good Kings, Bad Kings.” Overall, it is a very emotional book, but I think it is to show the hardships and what being in an institution is genuinely like, especially with a disability. My emotions definitely changed significantly over the course of the book. At the start, it was kinda like okay I did know about this and slowly has the book went on I became more disgusted with what was happening. Then finally at the end, specifically when Teddy died and how he died, just was really upsetting and it was rough. However, I am sure this happens in real life as well and it put me into a different perspective about the true treatment at all institutions. Despite the book being fictional, it opened my mind to what is kinda disability and the confinement looks like for that. I never had really thought about the abuse that could occur in institutions but aren’t prison related. So that did make me think differently about what truly goes on in those buildings and what isn’t shown to the public. It truly makes me wonder how many people or children have been silenced and what it is like to be in these institutions.

Critical Analysis

Paternalism is when an individual, institution, or state restricts the liberty or autonomy of an individual or group and justifies doing so by claiming it is in the the individual or group’s best interest. (Dr YG notes, wk 5, slide 12). Paternalism seems to play a prominent role on the characters in “Good Kings, Bad Kings,” with the institution typically telling or acting in the residents’ best interest. There are multiple examples of paternalism through out the book. Moments like when Teddy was being moved to a different facility and the decision was made the staff at that institution he had been living in, and it was for his “best interest” even if it was farther away from his dad. Which his dad had even ask why they didn’t move him closer to him because he would be able to see his son more often, but they said that it was a nice home. (Nussbaum, p.g.108). This shows that even if a parent has tried to put their input in, the staff at an institution still holds authority in decision making in some cases. This is just one example of paternalism in this book. It sends a message that paternalism happens a decent amount for people with disabilities in American Society. I see it as more that care takers think they know what is best for their patients even if the patients and the patients’ parents are at a disagreement on the discussion that was made. The connection that I have made between paternalism and institutionalization is people aren’t able to make their own decisions. Decisions are constantly being made for them, even if it’s decisions that aren’t what they need or want.

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When I first started reading Good Kings Bad Kings, I felt a mix of emotions. I felt empathy for the characters and their conditions in the institution. As the book progressed, I felt more anger and frustration at the neglect and events they were going through. The system that was supposed to protect and care for them often did the opposite. In particular, Teddy’s death hit me the hardest. It filled me with anger and saddens at how preventable his death was. Reading about these experiences made me more aware of how institutions can end up harming people. Although the book is fictional, it challenged me to think even more about disability and confinement. Before reading, I was aware of the conditions of many institutions because of this class. But after reading, it has really put it into perspective more about these experiences people have everyday. This book has made me reflect on the importance of listening to disabled voices. Reading about the characters’ lives so vividly portrayed really put institution issues into perspective.

Through the theory of “the business of disability, ILLC is a great representation. It operates as a place of profit rather than a place of care. Disabled people are treated as sources of revenue rather than as humans with needs and rights. In the book, Michelle Volkmann is a recruiter for ILLC. She gets more money the more disabled people she can “recruit” to fill beds at ILLC. This is a prime example of the business of disability at ILLC because her main focus is profit. Along with that, the business of disability shows in the prioritization of money over people. Yessenia, Pierre, and Teddy experience neglect and harm because their needs are overlooked for profit. Teddy’s death shows how dangerous this “business” can be. The things that should have protected him, like staffing, were compromised for money. Capitalism plays a central role throughout the book. It shapes the entire structure of ILLC and how it functions.

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While reading Good Kings Bad Kings, I felt sad, frustrated, and sometimes angry. At the start, it was hard to see how the residents at ILLC were treated. Staff made decisions for them, ignored their needs, and controlled almost everything in their daily lives. This made the residents feel trapped and dependent. As the story went on, I also felt hope when characters like Michael and Margaret tried to take control of their own lives. The book made me think differently about disability and care. It showed that care in an institution is not always about helping people—it can sometimes be about control. Confinement limits independence and keeps residents from making choices for themselves. Even though the book is fiction, it made me realize that real care should let people have a voice and freedom instead of keeping them trapped in routines and rules they did not choose.

Critical Analysis Prompt

Paternalism is when someone decides what is best for another person without asking them. At ILLC, paternalism controls both care and confinement. Staff decide what residents eat, wear, and do, and often punish or ignore them when they speak up. Care is mixed with control, and confinement makes residents dependent because they cannot make their own choices. For example, some characters are stuck in daily routines and cannot access what they really need. The book also shows that residents can push back. Michael and others try to speak for themselves, showing that care is real only when people have freedom and a say in their lives. The story suggests that care should not be used as a way to control people, and that confinement can trap disabled people and keep them dependent.

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2. Analyze Good Kings Bad Kings through the theory of "the business of disability" (Albrecht, 2018). How does ILLC represent the business of disability? What effects does this have on the characters? What role does capitalism play in the book? (You might consider not only of those living in ILLC, but also those working in and for the ILLC and those who own the ILLC.)

Earlier in class this year, we discussed the concept of institutions being “for-profit” and how that impacts the actual care the people living inside of the institutions receive. When an institutional care facility like a nursing home or an institution for disabled people is for-profit, the level of care is decreased as everything done is done to maximize profit. So an institutional care facility that is for-profit could be cutting out certain activities, repairs, changes to the facility itself, or the food the residents are able to eat. Everything that should be up to at least the standard of being comfortable is less as it would take money away from the facility. In Good Kings Bad Kings, there are many instances where this comes to the forefront. For example, the “punishment room” that the kids are sent to if they are misbehaving is described as being in terrible condition with a gross smell and just a bad place to be in general. If the facility actually cared about the residents and not making money, then maybe that room would be less inhumane to stuff kids when they are being “bad” and instead it would be a normal room. Or the showers where Teddy is badly injured. After a care worker leaves the shower room to take a call, a pipe bursts and dumps scalding hot water onto Teddy who is unable to move out of the burning water. Teddy later dies due to his injuries. If the facility would have had the pipes checked or fixed, it wouldn’t even have mattered that the care worker wasn’t doing what she was supposed to be doing as Teddy wouldn’t have been severely burned. On top of this, one of the workers named Michelle is a “recruiter” for the ILLC and is paid to bring people to the facility. Her whole job centers around “recruiting” people to come to the facility. Her boss even upped the incentives for her to get more the more people she brings. While it certainly isn’t the only thing wrong with the ILLC and many other institutional care facilities, I think it should be relatively agreed upon that for-profit care facilities are not a positive thing and likely shouldn’t be a thing in general.

4. Good Kings Bad Kings discusses cycles of dependency. How do disabled people become dependent on institutions? In what ways were the various characters dependent on ILLC? How did they break out of this dependence (or not)? What do cycles of dependence indicate about institutions/institutionalization?

In Good Kings Bad Kings and also just in the world in general, many institutional care facilities are built on the idea of dependency. The residents being “dependent” on the care they provide and that being what necessitates them. In the book, many characters have very independent personalities, but their spirits are crushed or at least damaged by the facility and by the fact that they are in a facility in the first place. Mia for example was not given the type of chair she needed. Because of this, she was highly dependent on others for something as simple as mobility. Due to this, it is somewhat obvious that part of why she may be less active could be because she physically cannot and is forced to be in an uncomfortable chair simply because the facility will not get her the one she needs. There are other characters that are more resilient as well though. Yessenia for example has a very independent mindset throughout the majority of the story, starting from the beginning and following her all the way through the end. But even she is affected to some degree by the institution as they move her best friend away without telling her anything and then forcing her to be a roommate that she clearly doesn’t like. She is dependent upon the institution for something as simple as just being able to enjoy her own living space and when her best friend Cheri is moved, it clearly has an impact on her. A character even loses his life due to his dependence on the institution. Teddy depended on the facility to wash him and watch over him. When he was brought to the shower to be washed one day, his care worker left the room to take a call and Teddy was left unattended. When a freak accident occurs and Teddy is as scalded by incredibly hot water, he ends up losing his life due to his injuries and complications. The cycle of dependency is a sad and unfortunate reality in institutions and it is a large reason they are as prevalent as they are and have been.

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My emotions during good kings and bad kings were up and down, sometimes I would be happy for certain characters, then sometimes I would be really bad for them. For instance, some characters would get their way or have something good happen to them after I got to know the character so it felt good to read something good happen for them. I felt bad when I read about Joanne getting hit by a bus, but felt better about it when I read that she got paid off and that she enjoyed living lavishly. My emotions really stayed the same going up and down throughout the book, there would be times when I would get wowed by something but overall my emotions would vary between happy, sad, grossed out, and surprised. It made me look at certain placement homes differently, some of those homes were worse than juvie or on the same level as some jails. It made disabilities look differently because it showed that some people are able but still constantly being put in the system as disabled and taking away the stuff they can do.

Prompt 4: Disabled people become dependent on institutions for many reasons like mental health reasons, financial reasons, and social reasons. In Yessina's case, with her parents not having anything to do with her and with Tina nene passing and her being sent to juvie and being put in an ILLC it forces her to be dependant ILLC’s, even though she has made friends within the institutions, she hates because of the rules and how they treat her like she isn't human. Joanne got into an accident that left her paralyzed, but she got paid a great deal of money as an apology. She takes a job at an ILLC and notices how they are being neglected and how they are being treated so she is trying to make a difference. So to me, she is trying to break herself out of dependency and is trying to inspire youth to break that cycle and make a change. Dependency can break people depending on the person, institutions can break you down by simply treating you as less than when you were more on the outside. It makes more dependent on the institution you are in but if they kick you out you are left alone unless you go into another institution .

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Reflection/Opinion Prompt:

What emotions did you feel while reading Good Kings Bad Kings? How did your emotions change as the book progressed? Although this text is fictional, how did it make you think about disability and confinement differently?

Critical Analysis Prompt (CHOOSE ONE):

1. Analyze Good King Bad Kings using the biomedical ethical principles we discussed earlier in the semester – autonomy, beneficence, non-maleficence, and justice. Is ILLC an ethical place? Do they provide ethical care? Provide specific examples from the book. Is it possible for ILLC to be reformed into an ethical place? If so, what would this require? If not, what might be a better alternative for the characters?

2. Analyze Good Kings Bad Kings through the theory of "the business of disability" (Albrecht, 2018). How does ILLC represent the business of disability? What effects does this have on the characters? What role does capitalism play in the book? (You might consider not only of those living in ILLC, but also those working in and for the ILLC and those who own the ILLC.)

3. Good Kings Bad Kings highlights the issue of paternalism for disabled children and adults, especially those in institutions. What is paternalism? What role does paternalism play in the lives of the characters? What message(s) does this representation send about the role of paternalism for disabled people in American society? How does paternalism relate to institutionalization?

4. Good Kings Bad Kings discusses cycles of dependency. How do disabled people become dependent on institutions? In what ways where the various characters dependent on ILLC? How did they break out of this dependence (or not)? What do cycles of dependence indicate about institutions/institutionalization?